Thank you so much for this information! I haven't been diagnosed w Crohn's and I'm hoping it won't be the case. I may have to
consider a new doctor as I need some answers to these GI symptoms.
I've heard also that surgery is not advised on Crohn's fistulas.
Mine started as a spontaneous abscess that ruptured two years ago . It was preceded a few years by excruciating pain but no visible signs. The gastroenterologists I saw were unable to pinpoint it. So far, I've had three fistula surgeries.
I don't take any medication yet as a Crohn's/colitis connection was inconclusive. My doctor said I'd have to have another really bad episode like the one that brought me to the hospital in October to really be sure.
My surgeon, too doesn't think it's Crohn's disease, although he said once my symptoms could be quiescent Crohn's.
I'd like to hear more about
your experience of you'd like to share it. What kind of a fistula, was Crohn's dx'd before or after, what did your doctors say?
Thanks again & wishing you continued improved health!
gypsyfp said...
Surgeons usually don't operate on Crohnies with fistulas because the risk of incontinence is too high and because there's a strong chance that an operation would only 'create more fistulas'. That's a quote from my latest surgeon.
I've had a complex perianal fistula for almost 6 years now that no one will operate on.
Mine was an abscess that ruptured and created a fistula.
How did your fistula start? Was it spontaneously or from a trauma, surgical or otherwise?
What meds are you on? After receiving remicade in May 2010, my fistula closed up and stayed closed for 6 months. That's the main med for treating Crohns caused fistulas.
You can keep having surgeries and increase your risk, but if you have Crohns, then you need to get on Remicade. But even with remicade, your chances of eliminating the fistula entirely are slim.
But having a fistula is not the end of the world. Aside from the fistula, I have a pretty decent quality of life, unlike other people without fistulas and much worse Crohns symptoms.